Make New Friends or Just Keep the Old? | Breast Cancer Support Groups

After I was diagnosed with breast cancer, I had a huge stack of papers and pamphlets: places to go, options to consider.  My oncologist, in particular, encouraged me to join some sort of support group.  There was one that fit me perfectly– breast cancer patients with young kids, of course the pamphlet was printed on pink paper.  In retrospect, I’m not really sure why I went.  I didn’t feel like I needed any emotional support. I suppose I went because I had put it on my to-do list, and so I needed to check it off. While I was going through chemo, I generally went if I hadn’t skipped a nap that week and I didn’t have anything more fun to do.  Honestly, I didn’t feel like I got that much out of it.  I think I found it more interesting from an intellectual perspective than anything else.

I didn’t go over the summer last year– it’s tough to make even a monthly meeting over the summer with travel and kids at home.  I figured I’d go back in the fall.  If I didn’t have anything better to do.

And then a friend had a recurrence.  She’d hung out with me while I was on chemo, told me what to expect with surgery, even shown me her scars and compression gear after her final surgery.  Last fall, I was faced with the reality that my candid, funny friend could die from breast cancer.

We have the same oncologist, and she knows that we are friends.  Of course, she wouldn’t talk about my friend at my appointment, but she cautioned me that I would know “people” who had recurrences.  That meant nothing about my chances of recurrence.  She felt very optimistic about my case, and she warned me about getting too close with women with breast cancer. She knows my background and that I want to be able to use it and my experiences to help other women with cancer.  She shared with me her own struggle maintaining a professional relationship with patients when she genuinely likes them– that it is hard for her to see them die.  But that she has to have some separation.  She shared all this with me in such a genuine way– out of concern, almost as a friend. As I worried about my friend (who is on a trial and doing great, by the way), I stayed away from the support group.  Why would I want to make any more friends who are likely to die? More than that, why in the world would I want to spend time with someone who will remind me not only of my own mortality, but of the fact that I could die slowly, in pain, with my little kids looking on? I didn’t feel like I needed the group or anymore baggage, so I made up excuses not to go. Not that I gave those excuses to anyone– they never knew that I went to begin with.  I gave the excuses to myself, knowing full well that I was telling myself lies.

As I approached my six month check up appointment in the spring, I started to worry. I worried about every little headache, an achy hip, a teeny little “nodule” in my breast. Intellectually, I knew I was probably fine.  But the “what ifs” began to take over my thoughts. I felt so silly calling my doctors. I was embarrassed to bother them. (Thankfully, Clay told me that he didn’t want me to feel bad bothering them, but that he would feel better if I’d check it out. It became less about me bothering them for me, more about doing it because he wanted me to.  And somehow that made it better.)  About that time, I discovered the BCSM group on twitter and found many of them talking about “scanxiety–” the anxiety that comes as you approach a scan or doctor’s appointment.  They talked about not wanting to bother their doctors with their fears of recurrence.

I found comfort in the validation. I hated that anyone else felt like I did.  Yet it was comforting to know that someone else felt just like I did.  I headed back to support group that month.  I sat in the room of women, some a couple of years out from treatment, one past the coveted five year mark, and one who was taking a break in the middle of her chemo treatment.  Because she was giving birth the next day.  I learned two major things that day. No matter what crazy things I worry about, other people worry about them too. Also, I should stop feeling sorry for myself because someone always has it worse.  I may have some things figured out when I walk in the door, and perhaps my words could help someone else.  And because she’s already been through something I’m struggling with, her words can help me.

And so I will go to support group, and I will make new “cancer friends.” Desperately, I hope that we will all stay healthy and cancer free and die as sweet old ladies. Yet I know that I may not have gone to the last funeral celebrating the life of a woman whose life was claimed by breast cancer far too young. Even so, I am convinced that we can gain more through the sharing of our stories than the pain of loss can take away.

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Good Intentions Unrealized | The Dangers of the Quest for Perfection

In the last week or so, it seems that I’ve read several posts tackling the subject of good versus perfect.  Posts discussing whether one should be happy with “good enough,” post suggesting that perfection is the enemy of the good.  I would never profess to being a perfectionist.  I will never have the perfect house, the perfect hair, or perfect children, and I am fine with that.  Yet, I find myself with good ideas and good intentions that are put off waiting for everything to be “just right.”  I want to send a note to someone to let them know that I’m thinking about them, but I can’t seem to find the right words.  I’d love to have someone over for dinner, but I worry that it will be one of those nights where something comes up and Clay has to stay at the office later than he intends. I want to get a gift for someone, but I can’t find just the thing that shows them how special they are to me.  And so I put it off so long that the good intention is forgotten, the good deed remains undone, the special people remain untouched.

The same principle applies to our health.  It’s so easy to put off scheduling a routine appointment waiting for the “perfect time.”  (Spoiler alert: there is never a perfect time for anything!) Whenever I can, I try to schedule next year’s checkup as I check out from this year’s appointment.  My mind works the same way for more acute issues, too.  I lose a lot of momentum as time passes. A lump is a lot more scary the first time my finger runs across it. While I’m busy trying to find the “right time” to make an appointment, I begin to convince myself that it was always there or isn’t really that big of a deal.

I know in my heart that it doesn’t make sense to wait for the time to be just right, for my house to be perfectly clean.  Yet my actions don’t always show that.  And so my challenge to myself is to act when my momentum is high.  If I think I should write a note, I should sit down and write it right then.  When it crosses my mind to schedule an appointment, I need to just do it.  If I can’t work it out, I can always change it. I need to stop letting my quest for perfection, even if it’s a subconscious quest, ruin all the good things that I could be doing.

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Routine Appointments, Compliments, and Icky Words

last day of school

The kids and their puppy on their last day of school.

I had my annual OB/GYN exam last month in the flurry of  “appointments before school gets out.”  I really like my doctor, he was there when I went in to labor with Emma Clare, and he delivered Turner. He has the greatest bedside manner.  He’s a runner, so we’ve talked barefoot running versus cushiony shoes.  He was the first one to hear I had breast cancer– my surgeon found out when she was at a conference and was hoping that he could give me the news in person as he was seeing me that day. (Only I had already seen him when she called.) When I called his office a week later to see if I could get out of a routine post-op appointment to check that my teeny incision since I was immersed in cancer related doctor visits, he called me back right away. Of course I could skip the appointment, and he spoke to me with such compassion about my diagnosis, making sure I’d been able to secure all the appointments I needed and that I was in the care of the best physicians.

As she and I were trying to squeeze in one last “the kids are still in school” outing, I was telling Sally I had the appointment and called him my OB.  He was there when I had my babies, so that’s how I think of him.  She pointed out that I am not pregnant, nor do I plan to be, and so I should start calling  him my gyno. ??? Besides the fact that it makes me feel old, that is such an icky word. Gyno.  Ick.  And this from a woman who cringes every time I say the word “moist.” Not that I would ever say “moist” in her presence just for fun. And I would certainly never do it over and over again.

Anyway, this year when I headed into his office, he did the same exam as always, but he stopped when he got to the breast exam. “Wow,” he said. He asked about my plastic surgeon. “He did a really great job. I mean, I don’t want to be weird, but wow.” Kind of makes a gal feel good when a doctor who sees a lot of, uh, women in my situation, can be so complimentary.  (You didn’t think I was going to say “women in my situation,” did you?) He told me how happy it made him to see me looking so great– having come out on the other side of breast cancer so well.  I told him I might just need him to follow me around to say nice things.  And babies or not, I’m not calling him my gyno.

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Surgery Wrap Up

The view from the exam table at my plastic surgeon's office

At the plastic surgeon’s office. Yep, that’s an implant on the sink. Because you know you want to touch it.

One week after surgery I headed back in for my post-op appointment. The one week appointment isn’t too eventful.  I won’t go through my whole outfit, but you need to be sure to dig out those good panties again.  Bonus points if you have two good pair, just in case the doctor remembers that you were wearing that same pair before.  And don’t forget, if you’re wearing spanx for compression, you need to toss those panties in your bag because you’ll have to ditch the spanx when you put on the paper gown so that the doc can check the liposuction incisions, and I’m betting that you’d rather not stand open-gowned to be examined– and have a full conversation– commando. (Which reminds me, I need to dig those panties back out of my purse so I don’t accidentally fling them out when I’m pulling out my wallet at Target…)

OK, now that we have the panties situation out of the way, on to the appointment.  My surgeon was pleased with the results so far.  The places he put the fat look much better.  He was very optimistic, though cautiously– but that’s just his character.  He’s a very conservative doctor, but he gets great results. He warned me that we can’t really judge until all the swelling goes down.  The six week appointment (the camera comes back out for that one, so all the panties and grooming talk applies again) will give us a very good idea, but he reserves all judgment for the three month follow up.  By that time, all the swelling and bruising should be completely gone.

And now for the big news: I still had good fat in my flanks! He was so sure that I wouldn’t, he made incisions in my abdomen and prepped it for liposuction before he started suctioning my legs. As it turns out, though, I’ve got some quality fat in my thighs. I’m so proud. He decided not to take any fat from my abdomen after all. Because he thought we should save it. In case I need it later. I wonder if anyone else has ever decided that they should save their fat for later?  I think he thought I’d be disappointed. But after three or four days above ninety degrees, my only thought was to ask whether I could ditch the super high waisted spanx. The prep work could leave me with some abdominal swelling, so he said I should stick it out for another week, but I’m thrilled to be able to switch to the low waist girdle in a few days. Plus, I got to keep my belly fat in case I need it later.  A win-win, right?

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Post-Chemo Pixie Grow Out | Chatting at Target

You know how you run into an acquaintance at Target and they ask how you are, and “fine” is your automatic response? Honestly, things would have to be pretty bad– or pretty great– to elicit a more lengthy reply.  Of course, when I was wearing a scarf on my bald head, these interactions could be a little awkward.  Most people handled it well, though.  My favorite comment was from the mom of one of my daughter’s friends, while smiling and staring at my bald head: “We-elllllllll, I haven’t seen you in a while. What’s new?” Obviously, to ignore the bald head and the cancer would have been ridiculous, so we had a nice chat and I filled her in.

But now, I’m not bald anymore.  In the past few months, I have run into a couple of people who worked with Clay years ago.  I always had long hair, and that’s how they remembered me.  They both commented immediately on my short hair– they were clearly surprised at the drastic change.  So how to address that comment? It’s more of a “fine” kind of encounter.  This isn’t really the setting to go into a long health saga with someone who I don’t know well enough to have spoken with in the past five years. Yet it seems a little disingenuous to act like I cut it short because I wanted it that way, to ignore the fact that I’ve had cancer.  After stumbling through the awkward encounter a few times, I’ve finally found some words. “Thanks, it is a big change.  I actually really like it short, but I’ve decided to try to grow it back out.”

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How To Not Get Breast Cancer

I’m getting a little weary of the new story that comes out what seems like every other week about something that is “associated” with an “increased risk” of breast cancer.  I worry that some women might feel to blame for their breast cancer diagnosis, and that others might feel empowered because since they don’t meet the new risky criteria, they are safe and can forgo screening.  I feel like a lot of those studies end up with little validity– they scare, they place blame, they confuse.  So I headed to the CDC to see what changes a woman’s risk for breast cancer, I decided I’d let them comb through all the data and vet all the studies.

They found that breast cancer risk is decreased by being older when you start menstruating, having babies– at a younger age– and breastfeeding them, getting regular exercise, and maintaining a healthy weight.  (For the record, I was the last of my friends to get my period, had my first baby at 27– not super young, but well before my doctor would have to pronounce me of “advanced maternal age”, and I nursed my babies for a total of 26 months. I’ve always been at a healthy weight and have been regularly exercising for at least the last four years.) A woman’s breast cancer risk is increased if she has taken hormone replacement therapy, has a personal or family history of breast cancer, has had radiation therapy to the chest, was exposed to DES in utero, has dense breasts, drinks alcohol, or works the night shift.  (Again for the record, no personal history of breast cancer or benign breast disease, one (ONE!) aunt with breast cancer, no radiation therapy, no hormones or DES, maybe dense breasts, I don’t work the night shift, and I don’t drink alcohol.  Not a drop. Never have.)

Basically, if I were reading the CDC document as a how-to list to avoid cancer, I would have checked almost every single box.  Of course, I am also far younger than the average woman diagnosed with breast cancer, and triple negative breast cancer (with which I was diagnosed) is far more prevalent in the African American population.  And yet, I had breast cancer. I “did” everything right– right down to getting my period super late and being white. And yet, I had breast cancer.  I’m not sure why I bring this up– it’s not very actionable data, after all.  I guess it’s to say that even most of the associations that have been validated are not something we can really do anything about, and even if we could change some of these factors, they’re not a guarantee, either. Though valid, the association isn’t that strong.  Yes, I would love to know what causes breast cancer. But given all the research and time that has gone into its study, I think it is fair to say that it is not one thing that causes all breast cancer.  Which means that it will not likely be one thing that prevents or cures all breast cancer. Certainly, research into the causes of breast cancer will lead to better prevention and treatment of the disease. But in the meantime, women are diagnosed with breast cancer everyday, and we don’t know why.  I guess that’s why, even though data indicate that mammography may not be the holy grail it was once thought to be*, I’ll still err on the side of mammograms. Overdiagnosis and overtreatment aren’t insignificant issues, either to the healthcare system, or the individual.  But neither is cancer. Somehow, I think until I knew for sure that checking off all the boxes on my list would keep me safe, I’d risk a few extra pokes of a biopsy needle, or even a few rounds of chemo.

*This is a good discussion for the patient on the debate on screening mammograms from the Mayo Clinic

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Post Surgery Update

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A friend texted me yesterday to admit to facebook stalking me to find out how I was doing.  Perhaps she wasn’t the only curious one…

I’m doing fine. This morning, I woke up feeling much less sore, so I think I’ll be going without pain pills today.  Wednesday and Thursday, I was definitely pretty sore, but still functional.  My plan had been to avoid percocet since it makes me itchy, but I was apprehensive about taking Vicodin, as at least I knew percocet wouldn’t make me nauseated.  The good news: Vicodin didn’t make me itchy or nauseated.  The bad: it didn’t help with my pain.  So yesterday I switched to percocet, and thankfully the itching wasn’t as bad as before, though that stuff totally throws me into a haze.  Glad to be going med-free today!

I’m also about to take my first shower in an embarrassingly long time. (Though it was doctor mandated, I’m not just gross!) I’m looking forward to that special first shower clean, and to ditching the foam pads that are adding an extra layer on my thighs.  The big question is whether I’ll be able to get all the little purple “x” marks off my chest so that I can wear a regular shirt.

I’ve enjoyed my two days as a patient, spending most of the school day in bed, either resting, on the computer, or watching bad tv. But my days of leisure are over– it’s a good thing I don’t think I need those meds anymore, because today I’m headed to school to learn all about colonial life from the fourth graders.  A little time to relax is nice, but two days is probably all I can hope for at the end of the school year.  So I guess I’d better go hop in the shower.

And for the record, for those who are following my car saga, I do not get a new car.  But the dealer is honoring the just expired warranty and rebuilding the transmission.  I’m supposed to get it back by Monday.  I suppose a week when I’m all drugged up is as good a time as any to be without a car.

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What to Wear | Post-Surgery

photo 2 - Copy (2)

I hadn’t planned to do another what to wear post, but after chatting at the bus stop, I decided to take another picture in my dirty mirror.  We were discussing all the compression garments I was wearing– yes, I was complaining.  Again. There are foam pads a quarter inch thick on the outside of each thigh, another one on my stomach.  I’ve got on a lovely, lace trimmed compression bra, a super tight abdominal binder, and of course, the girdle that goes down nearly to my knees.  I decided to share the outfit when one friend mentioned she had no idea all the “business” I had going on underneath. Oh yes, there’s a lot of business going on up under there.  A dark skirt that’s not too clingy hides the girdle and foam pads on my thighs, and the high collar and boxy shape of the tee hide the compression bra and at least most of the bulkiness of the shoulder strap flaps.

The abdominal binder means that he did end up using my belly fat for the fat grafting.  But he was a good sport, so tried my flank first, since it was my first choice.  Which means that I have double the compression, double the pain.  But maybe half the fat?  Let’s go with that.

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What to Wear | Surgery Day

what to wear surgery

Today’s the big day– hopefully the last surgery day.  And you know me– what I’m wearing is deliberate and planned out.  Of course, I need the maxi skirt for the compression gear that comes later.  This hoodie has become a surgery staple for me.  When you’re having breast surgery, you aren’t allowed to raise your arms over your head, so something that buttons or zips up is a necessity.  This one is great because it’s light weight and loose fitting. Flip flops are easy, and the glasses (ugh) are a must.  I think I need some new glasses.

surgery bag

I’ve got my bag all packed too.  Less is more.  I might add a book or single magazine, or maybe my little computer.  But really, there are so many people coming and going, asking your birth date and why you are having surgery in your own words.  (Maybe I’ll have to be creative on that one!)  But there isn’t a lot of free time, so you don’t need a lot to fill it.  But with surgery at 2pm and no food after midnight, I’m already starving, so I hit up the Rite Aid this morning so that I had a couple of favorite treats waiting for me as soon as I get the green light.  (Will update on my facebook page this evening.)

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The Waiting Game | Customer Service and Medicine

trixie

A very fluffy distraction

I was fortunate enough to attend the REV2014 conference a few weeks ago. It was sponsored by Livestrong and the Conquer Cancer Foundation, and combined physicians, pharmaceutical companies, policy experts, and patients and advocates to come up with actionable solutions to problems in cancer care.  I was part of a discussion on improving quality of care, and much of our time focused on what “quality” meant to us.  Of course, no one would consider they had received quality care if their physician was not competent.  And yet, we all agreed that how a patient feels about their experience depends on so much more than competence.  A patient wants to be listened to, understood, respected.  We want to feel like we have all the information to make the best decision on our own.

In general, there are few things that irritate me more than someone who says they will do something and fails to follow through.  On Friday as my surgeon declared that she would “eat her hat” if there was anything troublesome in the pathology of the orzo/rice/fat glob, she assured me that she would give me a call Tuesday afternoon.  I avoided dwelling on the pathology report over the weekend– it helped that we had a busy weekend.  The boys were camping and Emma Clare and I had a girls night.  We had two different parties on Saturday, and Sunday after church, Clay brought home our new puppy, Trixie. Definitely no time to worry about a pathology report.  Monday came and went, and I stayed pretty busy on Tuesday, too.  But by Tuesday afternoon, I was careful to keep my phone nearby, jumping anytime it rang.  And the call never came.  Wednesday was busy too, and even though I was leading a fourth grade sewing group in the library at the school, I left my ringer on so that I wouldn’t miss the call. I finally called my surgeon’s office, and was given the message that the report wasn’t back from pathology.  I cooked dinner on the grill and tucked my phone in the waistband of my skirt since I didn’t have a pocket and didn’t want to miss the call when I headed out to flip the burgers.  Still no call.  And even though I didn’t silence it, I checked my phone during every break in action at handbells, in case I’d missed hearing my phone ring because of the music.  Nothing.  Thursday morning, I left the new puppy in the yard to learn how to spend some time by herself.  But mostly, I left her because without pockets (again), I couldn’t take the puppy, my coffee, and my phone.  Sorry, puppy, but the phone and the coffee won out.  It turns out that I made the right choice, Trixie finally fell asleep by herself on the porch, and I finally got the phone call for which I’d been waiting.  Benign.  Exhale.

I don’t have a lot of experience at the waiting game, since the first time around I was so sure (and so assured by my doctor) that I didn’t need to worry about that cyst, I didn’t worry.  Honestly, I pretty much forgot all about it. Also, I think she called me a few days before she told me to expect a call.  (Good plan!) Once I’d been diagnosed with cancer, I didn’t worry much about the results of all the diagnostic tests, knowing that, while informative, they wouldn’t change the next step of treatment.  But waiting for a cancer/no cancer call is tough.  

I really like my surgeon and the office staff– they were so fabulous when I was first diagnosed with cancer, and I am completely confident in her skills as a surgeon. The thing is, if she’d have told me that she’d call me by Thursday, I’d have not obsessed most of Tuesday and all day Wednesday. A call a day or two early would have been a pleasant surprise.  And after I called on Wednesday, it would have been nice if my surgeon’s assistant had spoken to me to let me know that they were sorry and would call to light a fire under the people in pathology.  Neither of those things would have changed the results of the pathology, and I wouldn’t have gotten the results any sooner.  And yet, they would have made a difference.  The quality of my care (from the standpoint of medical competence) wouldn’t have changed a bit, but my quality of my life would have been greatly improved, even if just for a few days.

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